Health CommitteeWritten evidence from the Health Foundation (LTC 78)

1.0 Executive Summary

1.1 The Health Foundation is an independent charity working to improve the quality of healthcare in the UK. Informed by our research and improvement programmes, this submission of evidence considers the ability of the NHS to “treat the patient as a person” and recommends changes needed to deliver high quality, person-centred care for people with long-term conditions.

1.2 The NHS has only a very limited ability to deliver person-centred care for people with long-term conditions. This is because patients are largely viewed by clinicians as passive recipients of care and few are supported to develop the skills, confidence and behaviour to effectively manage their conditions. Furthermore, the way that the health system is structured and its processes are organised poses a barrier to more person-centred care.

1.3 The vast majority of care for a person with long-term conditions is delivered by the individual patient themselves because they are living with their condition every day. It is therefore essential that improvement of health services is focused upon supporting people to effectively manage their own conditions.

1.4 There must be changes to the roles, mindsets and behaviours of patients and clinicians, supported by processes and infrastructure that enable a new relationship of partnership between people and health professionals.

1.5 To make the rhetoric of person-centred care a reality, action is required by clinical commissioning groups, NHS England and those bodies with influence on the education and training of health professionals.

2.0 What is Person-Centred Care and why is it Important?

2.1 Coordinated, community-based services are important, but not on their own sufficient, to deliver sustainable and effective care for people with long-term conditions. There needs to be a fundamental change in how government and the NHS think about care for people with long-term conditions.

2.2 It is vital that the improvement of long-term conditions management is focused on the role patients themselves can play in effectively managing their conditions. On average, a person with a long-term condition spends just three hours each year in contact with a health professional, and that contact does not always coincide with the periods of time when an individual most needs support.

2.3 Person-centred care should support people to self-manage, offer personalised care planning and enable people to share in decision making.1 It should use the limited time patients spend with a health professional to: enable patients to become knowledgeable, confident managers of their health; support people with long-term conditions to make informed decisions about and to successfully manage their own, health and care; deliver care that is responsive to people’s individual abilities, preferences, lifestyles and goals.

2.4 Despite the promotion of these approaches by government and health policy leaders, truly person-centred care has not spread beyond core innovators. The ability of the NHS to “treat the patient as a person” is far too limited.

2.5 Creating this person-centred health system requires different roles, behaviours and mindsets from clinicians and patients, supported by processes and infrastructure that enable new relationships. Health professionals need to view people as partners in their care, rather than passive recipients. They need to understand the motivations and challenges that each individual faces in adopting healthy behaviours—not just the biomedical challenges, but psychological and social challenges as well.

2.6 This requires a fundamental shift in how health services are delivered, with the emphasis moving from focusing on improving clinical outcomes to quality of life, from providing specialist treatment to generic support, and from a system that reacts to people’s ill health to one that focuses proactively on enabling people to live as healthily as possible.

3.0 Our Evidence Base

3.1 This submission of evidence is informed by the Health Foundation’s improvement programmes and research, and focuses primarily upon our learning about how to effectively implement self management support and shared decision making.

3.2 Starting in 2007, the Health Foundation’s Co-creating Health (CCH) improvement programme worked for five years with several NHS sites to demonstrate the best ways to redesign routine care so that patients are well supported to manage their long-term conditions. It featured training programmes for patients and health professionals and a service improvement programme. Four sites have now been given additional funding which they will be using over the next two years to continue to embed self management in their services.2

3.3 The Health Foundation’s Making Good Decisions in Collaboration (MAGIC) improvement programme has been exploring how clinical services can support patients to share in decision making. MAGIC has not been tested specifically in the context of long-term conditions, but is relevant because people with long-term conditions are faced with care and treatment options.3

3.4 Our Closing the Gap through Changing Relationships4 and Shine5 improvement programmes have supported NHS teams to explore innovative ways to improving care. Projects have included the provision of home-based web consultations for patients with diabetes and support for people with kidney disease to use self-dialysis in hospital.

3.5 The research we draw on in this submission includes our syntheses of the evidence bases for self-management support and shared decision making6 and an exploration of the interaction between patients and clinicians during the consultation.7

4.0 Barriers to Person-Centred Care

4.1 The barriers to person-centred care are largely cultural and arise from the three key participants in healthcare: health professionals, patients and organisational processes.

4.2 Health professionals.
The attitudes, beliefs and behaviours ingrained in health professionals limit their ability to provide effective, person-centred care. Barriers include the following:

4.2.1“We already do that.” There is a lack of a clear, shared understanding about what effective person-centred care looks like. When urged to participate in our programmes, many health professionals said they already are supporting their patients to self-manage or are using shared decision making. But after training sessions, many realised that they had not been using a truly person-centred approach.

4.2.2“There isn’t enough time.” A common response to our programmes was that health professionals felt they had too much to do and no time to participate in training or to engage in self-management support and shared decision making. Clinicians also feared that the approaches would lengthen the time of consultations.

4.2.3Health professionals lack understanding about the value of involving patients in design and delivery. In Co-creating Health, for example, lay tutors sometimes found that health professionals questioned the role patients could play in clinician training.

4.2.4Health professionals are not taught skills necessary for person-centred support. Our programmes found that few health professionals are equipped with the knowledge and skills necessary to understand what motivates their patients and support them to change behaviours.

4.3 Patients
Individuals with long-term conditions may have a poorer quality of life, lower levels of support from social networks, and less confidence in their ability to manage their health than people without long-term conditions.8 Barriers include the following:

4.3.1Patients lack of knowledge, skills, and confidence to effectively manage their own health. Being diagnosed with a long-term condition is a life-changing event which may involve changes in lifestyle and require new competencies in, for example, medicines management.

4.3.2Patients feel “doctor knows best”. Feelings of deference or anxiety towards health professionals made some patients reluctant to engage in training programmes or in a new kind of consultation in which they act as partners with clinicians in planning and making decisions about their care.9

4.4 Organisational processes
Healthcare delivery systems—including the services that are commissioned, operational systems and financial incentives—can be barriers to person-centred care. These barriers include the following:

4.4.1Patients lack access to a range of services that fit their individual needs and abilities. Providing information alone is not enough to support people with long-term conditions. People need proactive support to help them develop the confidence, skills and knowledge to manage their health and care.10

4.4.2Commissioners lack an understanding of person-centred care and “how to get it”. Commissioners who gave insights for Co-creating Health recognised the role of self-management support in reducing pressure on services. However, their understanding of effective self-management support was mixed and some were unsure about how to commission it.

4.4.3IT systems can prevent easy access and flow of information. For example, one Co-creating Health team faced the problem of GPs using different IT systems, which prevented them from flagging patients participating in the training programme.

4.4.4Lack of access to test results or other information in advance of a consultation. Our systems are designed to give test results or information about treatment options during the consultation, which hinders agenda setting, care planning and shared decision making within allotted consultation times.

4.4.5Tariffs are not always aligned to provide self-management support. In our shared haemodialysis project,11 for example, people with kidney disease learnt to self-administer dialysis in hospital, gaining independence and freeing up staff. Patients use button holing—a means to self-administer dialysis—but the tariff acts as a disincentive because the needles necessary are more expensive than the sharper needles used in staff-administered dialysis.

5.0 What we have Learned about how to Overcome these Barriers

5.1 Creating a culture that supports person-centred care is a significant challenge. Our programme teams have had to be creative and flexible to overcome barriers. Support from senior leadership—up to trust board levels—has been vital in gaining traction.

5.2 Changing culture and behaviours among health professionals
Health professionals need education, training, and development that gives them the knowledge and skills required for person-centred care. The Health Foundation has learnt the importance of the following:

5.2.1Encouraging participation in training. Getting health professionals to participate in training required clearly setting out the benefits of self-management support and shared decision making. To address time concerns, teams had to adapt training, in some cases shortening the programme or offering mini-training sessions to support staff. Those who participated found that using shared decision making and agenda setting helped to structure consultations.

5.2.2Training whole teams. Co-creating Health found it important to train whole teams of health professionals from the same service, so that everyone involved had a common understanding of self-management support and its tools and techniques.

5.2.3Ensuring health professionals have the right skills. Training involved role playing as well as education in support techniques such as motivational interviewing and coaching skills, which are key to helping patients build confidence.

5.3 Changing culture and behaviours among patients
Patients who attended Co-creating Health group sessions had, on average, become more motivated and confident to self-manage.12 As one person who took the course said: “[I]t galvanised me, it got me going. I think I pulled myself out of a hole and decided that I was going to do it. Like the lay person [tutor], she’d obviously taken charge of her illness, and I thought well I can do that, I’m not a wimp”. Our programmes helped overcome patient barriers in the following ways:

5.3.1Encouraging participation in patient training. Co-creating Health found that patients sometimes needed encouragement from a trusted source—especially their GP—to prompt them to participate in a training programme.

5.3.2Offering activities that build confidence. Co-creating Health offered biomedical, psychological and in some cases social support through peer support. Group sessions included goal setting, problem solving, and relaxation, as well as condition-specific training such as self-monitoring or managing pain. Lay and clinical tutors used techniques such as positive psychology, motivational interviewing and helping people identify unhelpful beliefs.

5.3.3Adapting to patients’ needs and preferences. Teams sometimes changed the length or content of sessions to suit patients. They developed creative ways to promote and carry out self-management support, such as through practice-based resource libraries or text messages to follow up on goals.

5.3.4Involving patients in design and delivery of training sessions. Several project managers found that involving patients in the design, development and implementation of the programmes was vital to meet patients’ needs because the patient perspective “could not be imagined” by professionals.

5.3.5Promoting peer support. Peer support at some sites also helped motivate people to engage. Peer support activities ranged from regular phone calls with a “buddy”, reunions for those who had participated in training together, and a peer-led walking group.

5.4 Changing systems
Whole system change is needed to integrate person-centred care into care pathways. More work is needed at all levels to investigate and consider what systems or tariffs are supporting or hampering person-centred care. Our programme teams made some progress in this with help from their wider organisations. Progress included the following:

5.4.1Developing tools and support for clinicians. Some teams developed agenda-setting sheets to help patients identify what they want from a consultation, confidence rulers to help assess the likelihood of a behaviour change and health plans to capture patients’ commitments to their actions. Other teams developed electronic templates to prompt clinicians and help structure consultations. Administrative staff members were trained to help get information out before consultations.

5.4.2Creating access to home-based solutions that promote independence. A Health Foundation project has offered diabetes follow-up consultations by web-cam.13 Patients reported that, compared to face-to-face appointments, web consultations saved time, were more convenient and that they would be more likely to attend them.

6.0 Recommendations

We want to see as many people as possible supported to develop the skills, knowledge and confidence to successfully manage their health. To make this possible:

commissioners should prioritise their duty to promote involvement of patients in their care and treatment, including by involving people with long-term conditions in designing and developing support services and making sure they have access to a wide menu of options providing tailored support such as training programmes and peer support;

NHS England should support clinical commissioning groups to commission services that support self management by sharing best practice;

NHS England, working with Monitor, should ensure financial incentives encourage and support self management, and do not obstruct it;

NHS England should use the available measures to assess how well people are being supported to self manage and to invest in developing these measures further; and

Health Education England, royal colleges and professional regulators should bring person-centred care principles and training into undergraduate, postgraduate and continuing professional education curricula.

7.0 Oral Evidence

The Health Foundation would be pleased to give oral evidence to the committee if it would be helpful to the inquiry.

9 May 2013